Enter child number two. Our younger son was preemie. He was a difficult baby. He is also impulsive, defiant, stubborn, and tests boundaries. Then on the other hand is is sweet, loving, cuddly, easygoing, imaginative, and a good problem solver. The difference? While our older child was pretty energetic, our younger child is like the Energizer Bunny on meth. As he entered the preschool years, it was evident that age appropriate activities like playing a whole game of the dreaded Candyland were impossible, and that shouldn’t be the case. All we were really looking for was five minutes of concentration on one task.

This time, we knew we needed to consider medication. Our child wasn’t able to concentrate on tasks long enough for us to even try to teach him. If this was the case at home, how could we ever think of trying to send him to school? Now, as the first trial of medication worked, but wasn’t the success we needed and we are weaning off of them, we are definitely seeing we made the right choice. We are seeing all of those old behaviors come back. We are seeing the sensory seeking behaviors and stimming skyrocket. We are seeing regression in some harder life skills tasks because he just doesn’t have the patience nor attention span to work on them right now.

I do know one thing. I’m glad that we approach what our children need individually. They are different people with different personalities and needs, and we treat them as such. I’m glad we were realistic about the medication issue. I’m glad we are trying to figure this all out now, before our youngest is ready to start Kindergarten next Fall because he desperately wants to ride the bus and go to school like his brother. We are in a position now to set him up for the best possible learning experience as he starts his school career next year, and we are making the most of what time we have left.

*We’re not the only parents struggling with this issue. Rhea has also been struggling with the decision to medicate her son with ADHD or not. 

It doesn’t end there. The repeating. Before I had kids, I could carry on a conversation, and even ask someone else to do something, and it was done. Maybe one reminder, but that’s it. Now I find myself repeating the same things all day, every day. It’s like Groundhog Day. Like something in the kids’ brains forget what they were told even five minutes prior. Sometimes it’s an even shorter span of time. Really, you haven’t lived until you’ve answered, “Where’s Daddy?” about 50 times in a row when Daddy goes to work every day, 5 days a week. My personal favorite is when I keep getting asked where the neighbors went. You know, because keeping tabs on the four of us isn’t enough work. I must keep a neighborhood schedule as well.

Speaking of scheduling….I’m lost now without it. I used to do just fine without a calendar. Now, I must schedule everything, and I prefer to have each appointment fall at the same day and time, not only because the kids prefer it that way, but it’s easier for me to keep track of everyone. You can say I’ve become a bit rigid since discovering I need to schedule four therapists a week as well as all the other various checkups.

To my other special needs parents, have circumstances made you more like your kids in any ways?

My oldest had low muscle tone. His legs would get fatigued even to go to the mall and walk from one end to the other. He was within the height and weight limits, so he rode in our stroller on such trips and others where a lot of walking would be required until we had our second child when he was 5 1/2 years old. We didn’t know we were dealing with autism at the time. All we knew was that we had a child who clearly got fatigued, and had sensory issues.

Our second child who is now 4, still occasionally rides in the stroller. He is approaching the upper limits at 4ft tall, but there are a few times the stroller is still needed. He also still has a pacifier. It’s a sensory thing for him. We’ve tried all other kinds of “chewies” for him. No others are acceptable. Rather than have my child sticking other objects in his mouth, like toys, that are unacceptable to chew on, we choose to let him keep the pacifier for when he needs the sensory input. Its usage is decreasing as he gets older, but he still needs it more than your nypical (See: Be Different by John Elder Robison. I like his word “nypical” instead of “neurotypical”) 4 year old. This is the same child who has also always been WAY taller than his peers. Just because he looks 6, don’t expect him to act as such. He’s 4. Not almost 5, just 4.

If more people would worry less about what other parents are doing or not doing when the safety of the child is not in imminent danger, and pay more attention to their own kids and spread some more kindness and understanding, the world would be a much better place. If you take nothing else away from Autism Awareness Month, I hope that it’s that you’re not so quick to judge some parenting styles that you deem to be outside of your box, or what is deemed as the nypical box.

So if not a disorder what? I saw one parent say it’s a gift. Pfffft. Bwahahahaha. Ok then. Let me get on that delusional train. Don’t get me wrong, my children are gifts. My children have gifts. The autism? It’s not a gift. The autism can suck it. Excuse me if I don’t rejoice in the fact that my kids are autistic.

I was also told that some people like to let the person who is diagnosed decide what to call it. The people diagnosed in my house are 9 and 4. As their parent, I have to find the best way I know how to describe it to them when they ask me questions. Since I am like the boys in that I generally lack a filter from brain to mouth, they pretty much get the medical definition with the big words explained (my poor kids will be speaking medical jargon by 12).

So what say you? Is autism a gift, or can the autism take a flying leap?

Some people refuse the blue because it’s associated with Autism Speaks, and the organization can be controversial. That’s fine. I turned my blog blue because most people who aren’t dealing with autism on a daily basis associate the blue with autism whether we like it or not. If it brings more awareness, then yay!

I’m not writing these autism articles for me. I’m already aware of autism thank you. I’m aware of is 24/7/365. There are days I’m so aware, that I want to punch autism in the face (For the record, not my kids. I want to hug them. The autism). If one more person gains a little more understanding for what we parents of kids with autism go through from my posts, then I have achieved my goal.

There’s our 4 year old. You know, the one who doesn’t sleep. Hasn’t really ever slept in his whole life which means I haven’t really slept in FOUR YEARS. Yeah. That one. Even after trying EVERYTHING to get the kid to sleep, and resorting to medication, the kid still wakes up at 5:30am. Even after trying every trick we know after that, the kid still wakes up at 5:30am. I am not a morning person. At 5:30am, it’s hard to convince me that the universe doesn’t hate me. Usually by 7am and some caffeine, it’s better. Depending on how many times I’ve already heard “Mom, Mom, Mom, Mom…” It also depends on what’s being repeated that day, and how many times I’ve heard that in the first hour we’re awake.

Our 9 year old gets fixated on topics. I swear he probably knows more about Star Wars than George Lucas at this point. Then there’s Legos. And Lego Star Wars. Now it’s Harry Potter. I know more about these topics than I ever wanted to know. Things I could’ve gone my whole lifetime not knowing and I would’ve been perfectly happy.

I think my (least) favorite trait is the spewing of irrelevant information at the most inopportune time. Like if my husband and I are talking about baseball for example, and then our oldest butts in and says something like, “My friend at school missed 2 on our math test today.” OK then. Not my kid. I really don’t care. Thanks for sharing, and butting into our conversation with irrelevant information.

Oh wait! I have one more. When our 9 year old is trying to ask us what something is, and he’s fixated on one way to describe what he’s trying to convey, and we have absofrikkenlutely no idea what he’s talking about. We ask other questions to try and get more information, but he just says the same thing over and over, louder. Dude. I heard you, but I didn’t understand you. I’m trying to figure out what it is you’re looking to find out. It’s like a bad version of “Who’s on First,” that ends with all parties involved frustrated, and a 9 year old who can’t understand why his parents just aren’t smart enough to figure out his cryptic descriptions.

I’m constantly aware of autism. Are you?

Sometimes when we’re out in public and both boys are acting up, I wish they had huge neon flashing signs above their heads to let people know what the deal is. Why my 9 year old, whom most would think would know better, is running his hand along the shelves. Why he keeps antagonizing his brother. Why just in general my kids are acting like they’re 5 and 2 even though they’re 9 and 4.

Appearances set an expectation. Because my 9 year old looks his age, people expect him to act accordingly. My 4 year old looks 6 because he’s very tall. People expect him to act older than his age. Sometimes the looks we get…I know they’re judging my parenting, but I honestly don’t care anymore. I’m just doing the best I can with the tools I have. When my husband is with me, and the boys are having a particularly stimmy time, the looks are even worse.

The comments don’t help either. I admit, being pretty sarcastic by nature, I’m not one to usually let these comments go without a smart remark.

“Wow, they’re all boy, aren’t they?”
“Yes, last I knew they both still had penises, thank you.”

“You sure have your hands full, don’t you?”
(Looking at my hands) “Nope, they’re empty”

“I don’t know how you do it.”
“I don’t know any different.”

“Bless you.”
“Did I sneeze?”

I get that some people are trying to understand, but read an article, a book, something on autism, because I think the one phrase that grates on me most is “My kids do that too.” Really? Your days are spent as one giant OCD routine that’s not your own? Meals have to be certain foods made a certain way? You encounter meltdowns if you say you’re going to the grocery store and then drive a different route? You have to shop in certain stores and make sure your child tries EVERYTHING on because some clothes just don’t feel right? You’ve had a child meltdown because the meat fell out of their sandwich because they couldn’t problem solve to just put it back in – at 4, 5, 6 years old? You’ve had a child decide he’s not eating melted foods, to include melted cheese? You and your husband have to stand in the same exact spots each night to hug your child or the routine is lost? You have a 4yo who is barely sleeping through the night – for the first time ever in his life? I really could go on and on, but I think you get the point.

Just because my kids don’t look different doesn’t mean they are the same as yours.

Here’s my take: if it’s not a safety issue, who cares? I had one child who gave up his binky easily. I have another who is 4 years old, and still needs that oral sensory input.

Have we tried to do away with the binky? Sure. Has anything we’ve tried worked? No. And don’t tell me that I just don’t want to listen to my child fuss and that’s why I haven’t worked harder to take it away. To that I say, “How about we just cut off your thumb sucker’s thumb?” It’s a whole new ball game when it’s a sensory thing vs. only a comfort object.

Oh, and his teeth? Just fine thank you. Our dentist (who has no financial gain from braces) is of the mind that until their adult teeth come in, thumb sucking and binkies are just fine.

I feel as a parent of two autistic boys, and one who also has ADD, we have bigger things to worry about right now than some little ol’ binky. Before you judge, you may want to remember that you don’t know the whole story.

Posted with WordPress for BlackBerry.

Maybe I’m underestimating him? Maybe in his own way, he has already grieved for the Nana that was since she’s been in a nursing home for the last year and a half or so fighting her battle with Alzheimer’s and Parkinson’s?

First, Chili’s changed their menu again. Three of the four of us were actually looking forward to the half turkey sandwich and cup of soup combo. It’s GONE. Not on the menu anymore. We weren’t impressed. Especially since one of those people who wanted it was Asperger’s boy. It took us 10 minutes just to find him something else he was willing to eat. Oh, and our waiter, while awesome at his job, the toast is NOT better than the bun for the turkey sandwich. We like our sandwiches on buns.

Then we get our food. We’re eating, then Aaron declares he’s done after about four bites. The culprit – a pink child’s coat at the next table trimmed in fur. He was terrified of it. They had it up on the back of the booth, and a bag had been covering it. Somehow the bag got moved, and then Aaron could see it. If Zach happened to move and block Aaron’s line of sight, Aaron told Zach to move. He HAD to keep that coat in his line of sight at all times. You know, in case it got up, walked over, and attacked him. I ended up holding Aaron with one arm and eating with one hand the rest of the meal. We brought his food home.

I never thought I’d say this, but fur coats (real or fake) are now on my evil list. One ruined my dinner out. If you want to blame it on the fact that I only had a few hours of sleep, you can, but just say no to fur.